A month before Blackfoot native Frannie Baumgartner Crumley was born, her two-year-old sister was diagnosed with cystic fibrosis (CF)—a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. Frannie was also diagnosed with CF after she was born. This rare disease is found in about 30,000 people in the United States, according to the Cystic Fibrosis Foundation (CFF).
Frannie led a pretty normal life until she was about ten-years-old. Then, her CF had to be managed by doctors and respiratory therapists, in particular, to help prevent thick, sticky mucus from building up in her lungs, pancreas, and other organs. Those diagnosed with CF have a weakened immune system and when their airways become clogged and trap bacteria, this leads to infections, extensive lung damage, and eventually respiratory failure.
In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. This can result in malnourishment, poor growth, brittle bones, and difficulty gaining weight, despite a healthy appetite. Often, patients take enzymes to prevent this from happening. In the liver, the thick mucus can block the bile duct, causing liver disease.
“It was difficult growing up because I always felt and looked different from the other kids in school, and I was out sick a lot, too,” Frannie said. “One of the happiest moments of my childhood was having the opportunity to attend a week-long CF camp in Ogden, Utah. For the first time in my life, I felt normal being around other skinny kids who were also coughing. Together, we all had a fantastic time!”
Unfortunately, though, CF camps have since been discontinued because of the bugs they carried, but they weren’t cold and flu bugs. “People with CF are contagious to one another, but the bugs we carry do not affect normal people,” she explained. “Normal people can carry bugs that do not bother them, but they can be detrimental to those of us with CF.”
As a teenager and young adult, Frannie stayed as active as she possibly could. She turned to running and cheerleading, which helped to temporarily minimize mucus build up in her lungs. And she lived and worked in Blackfoot for 20 more years. After turning 40, she married Ryan and they relocated to Durham, North Carolina, near Duke Medical Center, where she could start pulmonary rehabilitation for the chance to get new (gently used) lungs. “What a great man to take on this adventure with me!” she said.
To qualify for a double lung transplant, Frannie had to go through a rigorous six-week pulmonary therapy program. This involved biking, hiking, and walking. “I pleaded with my husband not to take me on most days because it was so painful,” she said. “But once I got there, I was okay.”
One of the life-changing experiences she had was getting to know a wonderful and newfound family; all of the other amazing people who were listed on the transplant list, fighting for their lives. “We were truly blessed to be where we were and to have met one another. I couldn’t have gone through that process without them.”
After the six-week pulmonology training, Frannie’s name was placed on the lung transplant list, which her older sister never had the opportunity to have. At this point, her lung capacity declined to only 19 percent. CF confined her to her home and stole her ability to breathe fully, preventing her from doing simple tasks many of us take for granted, like driving, going to the grocery store, and even walking to the end of the driveway to pick up the mail. Even with an oxygen tube in her nose, it was still difficult for her to breathe.
“The transplant team could call you at any time of the day or night,” she said. “They called me on two different occasions. Each time I had to go to the hospital and go through the long process of being prepped for surgery, only to find out the lungs they had weren’t a good match for me.” This was really a challenging process to go through. Both times she called her parents in Blackfoot who were ready to hop on the next flight to North Carolina, not to mention all of the waiting and worry. “But I always stayed as positive as I could,” she said. “I always held on to my faith and focused on hope that things would work out.”
On Monday, February 20, 2017, at 1:30 a.m., Frannie received a third phone call from the transplant team. This time she hesitated calling her parents because she didn’t want them to get too excited. “Like before, I had to go to the hospital and prep for surgery,” she said. “I just had to wait and wait and wait, again. The entire time I was thinking, is this going to be the pair? Is this going to be a good match? But at the same time, I was praying for the family members of the anonymous family who I knew were losing someone so I could have lungs. I had lost my sister, so I totally understood that heartbreaking process.”
The third time really was a charm because the lungs were a good match. Normally the surgery would have taken approximately eight hours, however, her surgery only took six hours. Her doctor commented that hers was the easiest transplant he had ever done. Everything went smoothly and Frannie’s new lungs were perfect.
When Frannie woke up from surgery, her parents were there. “It was extremely emotional,” she said. “I can breathe,” were the first words she uttered to her family and husband. “I can breathe! This is wonderful. It feels amazing to be able to breathe like this again.”
Frannie was in the hospital for a month to fully recover, and then two months after surgery she was given permission to leave her house. She’s been able to go to the grocery store with her husband, which she hadn’t been able to do in years. “And, for the first time in a really long time, I was able to walk hand-in-hand with my husband along the beach,” she said. “We went for a three-mile walk. I never thought I’d be able to do that again. It was so truly special, and I’m so grateful to still have time on this earth to spend with family and friends whom I love dearly and have supported me through everything.”
Wolverine Canyon Marathon-Join us in the fight against Cystic Fibrosis
To help raise awareness about cystic fibrosis, the Bingham Health Care Foundation and Blackfoot Rotary have teamed up to bring you the Wolverine Canyon Marathon:
Sat., August 12, 2017
Fifty percent the funds raised from the marathon will go Frannie to help with the expenses of her recent double lung transplant
Learn more or register at www.Wolverine.run